Hello, I was just diagnosed with cancer on the side of my tongue and probably my lymph node. All on the left side. Has anyone watched Crazy Sexy Cancer? I am going into Duke,and Johns Hopkins next week to see what they have to say, but I am torn and wonder if I should be going a differnt route. I'm 32 not a smoker or drinker. Wish there was the best of both worlds somewhere. Off to work:)

Alas wishing, as I'm sure you know, doesn't make it so. My recommendation - and I'm confident just about everyone here will agree - is that you listen to your doctors. You're going to some of the best ones in the country at those institutions and they know about cancer.

Smoking and drinking are hardly the only route to H&N cancer. It may well be that like me you're HPV positive. You can read up on the connection here at OCF.

I'm not denigrating the young woman who made that film. I admire her positive outlook. I think you'll find that most of us here share that sentiment.

Eating healthy food, exercising and generally trying to live a stress free life are all wonderful adjuncts to real medicine. Which is what you need right now.

I wish you the best of luck!
David 2

(PS couldn't agree more with your signature: finally feeling up to it, I got myself a rather large shelter pup back in September; we needed each other)

Welcome to OCF! Why would you consider treatment for this aggressive cancer by any entity other than the top medical and research institutions? Medicine is a science and with it are proven and effective treatments based on intense research. No wishful thinking, magic salves or chanting will have any effect on this disease. If you want a chance at a successful outcome, stick with the big guns. Johns Hopkins and Duke are great places. Your treatment will be tailored to your specific form of cancer and will follow a protocol based on research. There are many on these boards who have endured the difficulties of this disease, ie radiation, chemo, and surgery, and are around to tell about them. You will get a lot of valuable support here. Get your head out of the sand and ditch the holistic junk. That stuff may help your emotional side but will do little to help you beat this disease. Good luck!

HPV is not likely associated with his cancer if it is located on the side of his tongue. We have seen a new group of OC patients in the past 3 years emerge that present themselves just like you do, cancer on the tongue, non smoking, casual drinker and young and they are almost always HPV negative. These cancer act just as aggressive as tobacco related OC so your best advice is to seek the very best OC specialists at a CCC like Duke and JH. Good luck next week and let us know what they say.

Welcome to OCF. The only cures for oral cancer are radiation with or without chemo and/or surgery. All oral cancer patients who are still here have wished for an easier route. This is a fast moving deadly disease that not everyone will get thru. There is no easy way around this. Its not an easy fight, but it can be done. The cancer centers you mentioned are both top rated. They are your only chance for a long happy life. Best of luck with everything.

Unless you are an Aborigine Shaman living in the Dream time, the subject of your post should be
[quote]Newbie Torn between dying of false hope or being cured.[/quote]

Talk about comparing apples to oranges: Crazy Sexy Cancer involved a very rare form of cancer of the blood vessels that less than 300 people a year get with a tumor that almost NEVER metasizes (EHE). Hard to imagine a cancer more unlike tongue cancer. More power to Kris Carr for making lots of money peddling her 90 minute session of "Power Storming" crap for only $47 on her web site. I couldn't do it with a clear conscience. Don't think you're going to find many fans here.

[quote=davidcpa]HPV is not likely associated with his cancer if it is located on the side of his tongue. We have seen a new group of OC patients in the past 3 years emerge that present themselves just like you do, cancer on the tongue, non smoking, casual drinker and young and they are almost always HPV negative. [/quote]

Sorry off topic but I wanted to ask about this- how do you know its not HPV if its on the side of the tongue? thanks

So far the only HPV studies that we have said that the HPV virus seems more likely to attack the cells found in the Base of Tongue and Tonsils and similar cells found in the anus, penis and cervix to mention a few.

Brief history, it used to be that the overwhelming likely candidate for OC was a elderly man who sat in a bar and smoked and drank his adult life. Then about 10 years ago we began to identify another group of OC patients who were not smokers, mostly male whose cancer was mostly in those 2 areas and the HPV virus was soon identified as the cause. About 3 years ago studies concluded that the typical HPV positive OC patient was a white male, born after 1948, non smoker, casual drinker, Primary in the BOT or Tonsils, often mets to a node or 2 and college educated. In fact if one presents themselves like this you have a 70+% chance that your Primary will test positive for HPV. The studies also concluded that HPV+ OC responded better to conventional treatments; had a better survival rate and had less of a chance of a recurrence. Then about 3 years ago I started noticing what I will call a 3rd group posting here who were younger still, males and females, non smokers, etc but their Primary was in the forward part of the tongue or oral cavity. They didn't test positive for HPV and their cancers appear to be just as aggressive as tobacco related OC. No cause as of yet has been associated with this 3rd group and the treatment remains fairly uniform for all 3 groups but there is talk of somehow trying to reduce the side effects of the HPV group since it has preliminarily shown a better response to Tx but no studies to my knowledge have been approved towards that end.

Imitation is the sincerest form of flattery so I'm going to paraphrase Gary's post on another thread;
[quote]There is indeed a 100% holistic, natural and entirely organic remedy for oral cancer: DEATH.[/quote]
thanks Gary
Charm

David, thanks for the info. I hadn't known that about the non-HPV related tongue cancer incidences. I sure fit the profile of the HPV positive one though.

Whitma30, hope these posts by people who've been through it are helping you make an educated decision about treatment! (read: a medical one)

D2